Friday, 3 February 2017

#ClinicSpeak & #BeHuman: talking about death

Putting humanity back into clinical practice; being brave enough to talk about death. #ClinicSpeak #BeHuman #MSBlogMy Thursday afternoon MS clinic often leaves me emotionally exhausted; it is full of highs and the inevitable lows that go with looking after people with a progressive and very disabling condition. I saw several patients with end-stage disease yesterday and I now realise that I shirked my responsibility of talking about death. When I left clinic and was walking to the Underground I didn't feel comfortable about my clinic. I felt very dissatisfied with how handled the clinic; something was missing. I now realise what was missing.

On the tube to work this morning I read the brilliant perspective below on 'end-of-life conversations'. If only I had taken the opportunity to start this conversation with some of my patients and got them to start thinking about advanced directives and planning for the terminal phase of MS I think I would have felt a lot better. I failed them, I was not being a good doctor. I wasn't managing their MS holistically.

The bottom line is have you thought about dying and how you want to die? Do you have an advanced directive in place? If not may be you should bring up the conversation with your healthcare professional next time you see them. Doing this when you are relatively well and sound of mind is the best time to do this.

...... Just by walking around Carol’s home, I gained insight into her health, despite my limited clinical knowledge. As I left on the first day, I wondered how much more I would have learned from Carol had I stopped worrying about asking the “right” questions about her history. So on my next visit, I left my white coat in the car and let Carol take the lead. She showed me photos of her grandchildren, and we discovered our shared love of Chopin. But when I asked about her plans for the future, to my surprise, Carol said she knew she’d long outlived her prognosis. “I do my own studying online, too, you know,” she said. I looked around the room crowded with books and photographs and the piano she could no longer play, and I wondered what it must be like to sit in the stillness, making peace with the end that awaits us all.....

...... I then asked Carol about death. A year earlier, I’d been too nervous to ask a standardized patient about his chief symptom, but here I was asking Carol how she envisioned the end of her life. Which is not to say that I knew what I was doing — I even struggled to read the suggested prompts off my worksheet. But by sharing her story so candidly with me, Carol seemed to have given me permission.......

...... She revealed that she had her death all planned out, right down to the spot where her daughters would spread her ashes. “Mind you, I haven’t told them all this yet,” she confided. “I don’t think they’d want to hear it.” I asked her how much she’d be willing to go through in order to gain more time. She told me how difficult her last taper of prednisone had been. “If I had to go through something like that again just to stay alive, I don’t think I would,” she said. “No, in fact, I wouldn’t.”........

....... It’s been 3 years since my last visit to Carol, but we still keep in touch by phone. As she continues to defy the odds, I sometimes feel guilty about the assumptions I made when I first arrived at her cul-de-sac. So often physicians’ biases can prevent us from truly listening to what patients have to say, but I’m glad I had a chance to understand Carol’s perspective and see how I was misguided. After all, from her vantage point, that cul-de-sac wasn’t a dead end at all — it was just the beginning of the road. Who knows where it will take her from here?......

Re: "you die with ms and not from ms" is what I would interpret as an alternative fact.

Most people with MS (~75%) die from one of the complications of MS and/or its treatments (pneumonia, septicaemia, pulmonary embolus, suicide, PML, drowning, fall-related head injury, etc.). In addition, MS itself can directly cause death, for example a brain stem lesion in a vital area. Sudden death in MS is a well described condition.

Everyone dies. I think it's important to think about, to talk about, to normalise. It will happen to all of us. With MS the dying part doesn't affect me nearly as much as hitting a point with the disease where I begin to lose my mental/physical function and have to stay there for who knows how long. I imagine in that sense, my feelings are not uncommon.If I had a doctor willing to just have an honest, non judgemental conversation about how best to "deal" with that, I imagine all parties might feel, more at ease?

No I am not. All I am highlighting is the observation you can interpret facts differently and this interpretation affects how you present them. It is the glass half-full or half-empty debate. This is why MouseDoctor suggested I buy rose-tinted glasses so that all my posts would come acrorss as if they had been scripted in La-La Land.

Sometimes ProfG it can seem that you're rather cavalier in how you post things, without putting them in context. I had previously learned that PwMS die some 7/8 years younger than the general population, but I had no previous awareness of sudden death and so I did a search on the basis of it being a 'well described condition' The first thing to come up was the Blog post from 2012 and so I now comprehend what it refers to, but can find nothing on numbers who die this way as a result of having MS. Or indeed information referencing it beyond 2011. I also found a summary of the Canadian study 2015 that states the average age of death for PwMS is 76 years, and most common cause of death is MS itself or complications related to the disease. But, without sounding like I want to be in denial, to what extent is this/will this be impacted by the DMTs now being used? I've just told my husband about sudden death and he asked 'Are you more likely to die in a car crash or should I be actively prepared for this possibility?' and my answer 'I don't know'

the thing about death is that no one can do it right. we all have different opinions and docs are constrained by their own fear (they are just human) - it is such a difficult topic. when someone makes an effort, at least they are putting it out there.

but more important than that, to ease your fears - you are far more likely to die in a car crash then sudden death due to MS.

It is far too early to know if DMTs will change MS mortality stats... we all hope for lack of anything better to do :)

My partner exercises, doesn't smoke but still enjoys the drinks and refuses to participate in 'mindfulness' in order to keep her brain healthy ;)

Cheery post for a Friday night. Not sure about the obsession about planning for death - when it happens it happens. Your post does expose a truth that MS is a killer disease. I've always found it difficult to reconcile the claim on MS society websites that "people don't die of MS", with the research which says that MSers lives are shortened by 8-10 years and research by own neuro is south London which showed that the average life expectancy after diagnosis was 30 years. I have known a number of people with MS die in their 50s and 60s suggesting my neuros research is more accurate. Talking about death with an MSer with late stage/terminal stages MS seems to be more about the neuro than the patient. At this stage of the disease the patient could quite rightly ask the neuro "why couldn't you have done more to help me?". A legitimate question given that neuros are so called experts in neurological disease. Just telling a patient to make sure they have a living will etc. seems a poor return given the cost of training a neuro and their salary cost. Let's hope that the next generation of MS patients get a better deal and the next generation of neuros can leave work each evening knowing they have changed patients' lives for the better, not just shrugging their shoulders and handing out glossy pamphlets proving details of funeral directors!

planning for death is important from a number of perspectives. it's not just people with ms.

do you know anyone who runs their own business? runs a business with partners? - they've planned for their own death.

do you know any step/blended families? they've planned for their own death.

it is more than planning for your death. it is also planning for how you want to be cared for, who you want to do it, where you want to be cared for, what type of treatments you want - and doing all these things while you are able to make those decisions. when you are unable to make them: it's too late.

you sound like you are not ready to think about any of it - and that's perfectly ok. (it's ok to be angry at neuros too lol, i must be angry at them too cos i enjoy torturing them lol). but don't let those things take the death conversation away from others - those who do need it or want it but are too scared to approach it - and there are a lot of them around :(

i'm a lawyer. i do a bit of work for children of the elderly who accuse their siblings of stealing from the elderly. my perspective is a bit depressing i agree, but it's real.

The first thing the neuro should do after the patient is dxed with RRMS is to ask what color they would like for their tombstone and also whether they want to be unplugged from the wall. [sarcasm] Trust me, mortality is never far from my thoughts. If someone could do *something* to either fix this or at least make it not hurt and make me feel normal it would be easy to "back burner" the disease as so many unfeeling practitioners are fond of saying.

none of my partner's docs have had a mortality convo with her: and so they shouldn't: she is young, healthy other than ms, fructose intolerance, ecsma and a history of breast cancer... but dear god, when the time comes (whether at 50, 60, 70, 80 90 or 100), i hope some of her treating docs are brave enough. it's far too early 'now' - if one did, i'd prolly tell them where to go (for her right now, it's too early to be reminded of her mortality by third parties).

that said, she and i talk. we have had the convo. if she ever reaches the point where she needs to throw in the towel, i want to know. if she ever reaches the point where the 'trying' and the 'hope' are too invasive and too costly, i want to know.

i want to know because i don't want her to live for me: i want her to live for her.

every night i go to sleep and every morning i wake up i pray (lol i'm actually an atheist) i will never need to know in my lifetime. but if time comes when i need to know: i need to know her terms, her wishes and when she can no longer take it. a life without her is scary enough. a life without her where i wonder if she got what she needed and how much she had to suffer in the process seems worse.

we are 'lucky'. we have the knowledge and the resources and the care/love to the do the right thing by each other and to talk enough to understand what the 'right thing' is. i wish everyone was so lucky, but i know we are in the minority. i made her a promise a year ago, during one of her darker moments. i promised that unless she is trully depressed, if she ever reaches the point where it's too much and she is ready to give up: i will move heaven and earth to achieve what she needs. i have never made a promise i haven't kept yet.

we are all going to die. the only thing that matters is happiness while we are alive: otherwise what's the point?

i'm 36 and she is 41. she faced her own mortality 3 times during her 41 years. hardly seems fair, but life was never about fairness...

Thanks Prof G for another reminder to do this, at last I have done so using this useful online tool:https://mydecisions.org.uk/Took 10 minutes, printed out ready to sign and share with family. All saved securely online, can go back into it at anytime and update. Feels good to have done.Have a good weekend everyone :-)

All doctors should feel able to ask their patients with deteriorating end stage illness and deteriorating function about their concerns for their future and if there are things they want to talk or ask about. Many will say no because they are 'going to beat it', others will welcome the chance to talk about their fears, plans, uncertainties and hopes. These do not all have to be specifically end of life/death conversations but it can give people the chance to review their life, illnes and is important to them. There is just a need do check,'do you want to talk about these things'? rather than ticking the end of life/death conversation.

I am not sure it is. No everyone likes talking about death. Modern society suffers from the ostrich syndrome (head in the sand). Every HCP and person with a chronic disease should read Atul Gawande's book 'Being Mortal' he discusses this problem in depth and provides some very interesting insights on how to deal with this the taboo.

Actually I should have added my thanks for the reminder ProfG in my earlier post. Thanks Judy for sharing My Decisions. I'd previously looked at a couple of sites, but this is easily used with helpful guidance and besides a little tweaking I've about done my Advance Directive.Ditto to the have a nice weekend everyone

This is why I've stopped reading online blogs or research articles....so much hopelessness. It does have a mental effect which I believe makes it worse. Very depressing post. I'm not in denial. I realize malignant or fulminant MS can lead to death, but this unnecessarily freaks us out.

Yes I completely agree with Fi and her question to you Dr G, I signed up for email alerts on this blog yesterday having been diagnosed six months at the age of 31 and this has beyond upset me and I'm a well balanced optimistic person and I'd like to stay that way! Dr G please answer me this, if you're saying 75% people die of Ms (with the list of mixed reasons to die) one can not deny statistics and fact but considering your Sharing these hard blunt facts with people 'affected by MS' can you please clarify by giving more detail to the list you've earlier this evening supplied us with. Can you infer the age brackets please. Otherwise could infer old age with most of these symptoms. Please do this for us as we have MS and these sort of facts that you are giving out actually are life changing for us.

I have posted on this many times. Most pwMS die when they are old. MS only reduces life expectancy by ~8 years on average. However as MS is a disabling disease this hides the fact that most people with spend their lives quite disabled. The causes of death in pwMS are well studied. You may find previous posts on this issue helpful. Please note most of the data that is published is from the pre-DMT era. I know that DMTs are changing that; interferon-beta, a modestly effective DMT, increases your chances of being alive at 21 years by 50%. If interferon-beta does this what will the high-efficacy drugs do?

"yesterday having been diagnosed six months at the age of 31 and this has beyond upset me and I'm a well balanced optimistic person and I'd like to stay that way..."

my partner was diagnosed with an aggressive breast cancer at 31... i was 26 finishing uni at the time: talk about depressing. actually she was misdiagnosed first then faced the fear that it had spread because of the delay with the diagnosis.... then they though her breast cancer had returned at 36 (it hadn't, but talk about fear and reflection on mortality), then she got ms and then she decided to have nm hsct and neuros (4 of them, told her she could die or get the breast cancer back - lol)....

talking about end of life and mortality doesn't suggest you will die tomorrow from ms.

we will all die one day, whether tomorrow or in 30, 40 or 50 years. 10 years ago we made a decision to live life as if we will die tomorrow. prolly not the most sound decision financially: but my god, i could die tomorrow and be entirely happy.

Would it be possible for someone to write a post about death statistics in MS? Do patients die on average 7-8 years earlier than healthy population or 30 years after their diagnosis as Anon5:52 wrote above?

We've always been told that MS is disabling, but doesn't kill. Could you also show us that this is indeed an 'alternative fact'? What about sudden death? Shall we start preparing our family about it even if we are doing relatively well? And do you expect that the DMDs will be able to cause a paradigm shift?

Open the web version of the blog and you will see a search window on the left-hand side of the blog. Enter the search term 'causes of death' and a list of 10 or more posts will come up on this topic. I have listed a few above for you. Hope this helps.

Most people seem to be focused on my commentary. Please read the perspective article in the NEJM. It is very uplifting and demonstrates that a HCP level having the conversation improves your ability to care for people with disabling or terminal illnesses.

lol most people here are wondering about their own mortality. they are less interested in the (uplifting or otherwise) demonstrations on the role of HCP in having the death convos with their patients....

imagine if you were in a walkathon your life depended on. imagine if you had a stone in your shoe that kept rubbing your foot while you were walking in this walkathon you had to participate in... imagine if, instead of listening about your experience with this friggin stone that is rubbing your foot raw in this walkathon you couldn't pull out of, some doc tried to convince you that you are not paying enough attention to the fact that it's important for docs to have the convo they want to have (because it's good for the patient) even if you are neither ready to face to the stone nor to have the convo....

i have seen multiple comments where you try to tell others they don't understand the point because research has shown that people benefit from what you are trying to do and they just don't get it. it is patronising even if you are right :)

Morning and thanks for pointing us to the posts on causes of death and highlighting the positives. I notice that you and the rest of the team can point out that there have been previous posts. The difficulty is, in some respects, for us 'newbies' where there isn't the continuity of months or years of accessing the info on the Blog and therefore experiencing something of a sledgehammer moment- as with sudden death yesterday. In addition, there is the impact on our family, not just ourselves. I suspect most of us accessing the Blog are Need To Know people and personally I've benefitted massively from the information supplied on your site. I've been on a massive learning curve since diagnosis 13months ago and credit the Blog as supplying the vital information that I've shared with others. Only yesterday I was showing four women, I used to work with, your image of a normal human brain and an MS brain (without treatment I know) I think perhaps this lulled me into a false sense of security about having become something of an expert layperson and then I read your commentary yesterday, driving home there was more for me to learn and digest and inform my nearest and dearest about! Perhaps it would be advisable for repeated post topics to always have added the recommended search title such as 'causes of death' so that those of us who wish to can quickly and easily access the additional facts, figures and information.Thanks again for the Blog and driving forward consideration of and discussions about living and dying with MS. I'm certainly feeling empowered by having made a start on my Advance Directive.

I was having trouble sleeping this certainly won't help... sometimes head in sand is not the worst predicament... I don't believe there is any point in focusing on these stats. What's the probability I get run over tomorrow or I crash my car or my plane next week crashes or or or... yes it's important to know there are death stats around ms but there are with death stats around ordinary daily life too. Relax everyone. Have a good weekend!

I think it helps knowing such statistics when considering DMTs in terms of a risk:benefit standpoint. Sure, we don't know who will be that statistic, but I want to know by how much the likelihood of something happening is increased.

This isn't the place for people to come to seek information on emotionally difficult topics. This is not a place to find the necessary wisdom and support. Indeed, many - sometimes also tendentially narcissistic (they're human too) - medics have difficulty with true empathy, with just having the time, energy and headspace to deal with the infinite spiritual dimensions, with the vast emotional consequences of disease, of life.

The MS Trust have some basic information (https://www.mstrust.org.uk/a-z/end-stage-ms) and recommend this site for people concerned with the end of life: http://www.dyingmatters.org/

(I am not affiliated to the MS Trust.)

On the topic of loss due to MS, I stumbled upon this information on a Jacqueline Du Pré tribute concert: https://www.mssociety.org.uk/ms-news/2017/01/jacqueline-du-pr%C3%A9-tribute-concert-raise-money-ms-research

Wasn't the point of the post to actually get people to think about how they wish to be treated should they become incapable of making their own decisions - whether you have MS or not?

I can guarantee you that life is a disease with a 100% mortality rate, and despite all of us hoping we'll just go to sleep and not wake up one day, that's probably not going to be the case - for anyone, not just pwMS.

After all, isn't taking out life insurance pretty much the same thing - you really hope you never have to use it, but it's good to know it's there.

You can't know what the cause of your demise will be, or the impact of MS on your life expectancy - so don't worry about it, just see making plans as a sensible thing to do - or not, if you don't want to – it’s not an MS thing, it’s a part of the being alive thing, and we’re all going to die – of something.

lol i disagree, he can win and nothing in this thread suggests he is not 'winning'.

a little bit of criticism, especially from one's stakeholders, is often a good thing. even if you (or prof g) disagree, there is still a bit to learn from those who disagree. imagine what state the world would be if everyone agreed and no one offered new insights :)

ProfG thanks for responding by providing the list of previous posts and a search topic. I've noticed you, and other team members, will point out sometimes that there have been previous posts. It occurs to me the difficulty may arise for us 'newbies' to the Blog. Whilst there is continuity in topics being revisited, there can be sudden surprises for those of us reading something for the first time - as sudden death in your commentary yesterday proved to be for me. I wanted to know more, so I could ensure my family know, as far as possible, what they can expect. I've been on a massive learning curve since my diagnosis and the Blog has played a pivotal role in that process. As an extension of that my nearest and dearest feel secure of being as informed as I can make them. Only yesterday I showed 3 women I used to work with, the image you provided of a normal and an MS brain. Perhaps when referencing subjects that you have addressed so many times, you could bear the new- to -all -this in mind and maybe add reference to previous posts/search topic. If my perception is accurate there is a distinct and widespread denial of the fact that PwMS die of the disease, amongst HCPs and charities etc. So, it seems a massive challenge to focus on how the discussions can and should be had with patients, even before taking account of how the individual PwMS feels about the subject matter.Personally I'm grateful to the Blog for so much of what I learned and now for my nagging my husband about sorting out Power of Attorney. I thought I'd done this comment early this morning - so if it turns out I get posted as saying pretty much the same things twice - my apologies!

In the quiet hours while Lawrie Daniel waited for death, he wrote heartbreaking letters to his wife Rebecca and to the NSW Coroner describing his unrelenting pain from multiple sclerosis, calling for voluntary euthanasia to be legalised to ensure people would not have to die alone. “I am so sorry I have had to leave you all and end my life this way, but I could see no other option available to me in the circumstances,” Daniel wrote.

If you're reading this - then I'm already dead'Andrew Barclay was pictured with his beloved wife just hours before he ended his own life in Switzerland - despite doctors saying he could live another ten years

PML Risk Infographic

Holistic Management of MS ver. 7.0

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